Zero across ADOS

(9 Posts)
Kayla3790 Sun 26-May-19 21:52:20

I had my sons ADOS feedback meeting last week which has left me confused and heartbroken, he amazingly scored zero across the whole assessment which completely surprised me, they said as he can make eye contact, hold of conversation about caterpillars, play at the same activity table as another child, have a back and forth conversation with them about his interests, use imaginative play, use one object in the place of another than he shows no ASD traits and they said he has no needs what so ever he’s just a ‘little monkey’ and its my parenting.
My son is 4 iv thought since the age of one he has ASD. He had no development at all until he was 1, he didn’t talk or even babble until 2 1/2 and then it was complete sentences, he bounces when he talks to people, has epic meltdowns, if children try to play with him 9/10 he will move away or if he does play its alot of controlling play eg you pretend blah blah and i pretend blah blah (i also noticed this during his ADOS) he doesn’t seem to just play its always I’m pretending blah blah, he has alot of sensory needs, hes seen an OT who said he displayed major red flags for ASD and PDA, she diagnosed him with SPD and put him on the pathway to ASD testing. Hes also diagnosed with global developmental delay.
Im confused how they can say he has nothing when he has diagnosis’ of other things they said that the diagnosis’ are wrong and i need to go on parenting courses to reverse his behaviour as its just behavioural issues. I dont agree with this i have 2 other children 1 with alot of processing diagnosis’ and the other is ‘normal’ if it was my parenting surely they would all have behavioural issues? My youngest lashes out, shows challenging behaviour and epic meltdowns in all settings. He also has an EHCP which I’m not been funny if the education psychologist and everyone else involved in agreeing to an EHCP didn’t see or gather evidence to prove he has complex needs he wouldn’t have received one.
His school assessment/observations by ADOS team was done as his new school which he had only attended at that point for 3/4 weeks even his school said it was the honeymoon period, now 7 weeks into been there and now knowing the routine his challenging behaviour is coming through as well as needing extra safe seat time and reminding of the behave chart system. His teacher said she was surprised he scored zero and to talk to SENCO and his GP about a second opinion.
What would you do in my situation, would you believe them that hes not autistic and has no needs at all and that its down to my parenting or go and seek a second opinion? Im in England

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Isatis Mon 27-May-19 01:23:56

Is it worth the school redoing their side of the ADOS in light of their current knowledge of him?

Kayla3790 Mon 27-May-19 07:50:38

Unfortunately wasn't the school who did it was the same people who did the ados but the school have set up a meeting with them for next month as they don't agree he has zero needs

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Lara53 Thu 30-May-19 20:32:53

This is typical. My brother and his ex wife were blamed for her issues - their parenting was constantly blamed for her poor behaviour, lack of social skills, the fact that they had a baby when she was 7 apparently caused her issues!!! They did everything they could to prevent her getting the support she needed. They wasted a year sending my bro and ex on parenting courses for neurotypical children which obviously were useless.
My DN has always struggled. Didn’t talk til 4.5, really poor focus, hypermobility etc. Turned down for EHCP in Yr1. Assessed privately and diagnosed with Dyslexia, ADHD and ASD in the following 3 years as school massively failed her. At the end of Yr4 school we’re finally successful in getting her an EHCP. Unfortunately she then moved to a different area who said it wasn’t valid as it had been awarded by another county. Fortunately with GP support we managed to get them to accept the diagnosis and continue support.

Kayla3790 Thu 30-May-19 21:13:57

He things is he has an EHCP so my main grip is how the fuck has he got this if as they said hes just got behavioural issues and down to my parenting? Never mind that he also has additional diagnosis’ that contradict what they say but according to them his diagnosis’ are wrong they didnt see any sensory issues 🤦🏼‍♀️ He just stood and jumped the whole time he talked to them as well as been majorly flity and running back and forth but yh okay no sensory issues even tho his OT stated he has SPD and that hes not delayed but then they went on to say his emotional regulatory is that of a 2 1/2 year old hes 5 in a few weeks yh this isnt an issue 🤷‍♀️ Just behavioural hmm im hoping a second opinion sheds some light as he really struggles and the last thing i want for him is all his support in school taken away from him.

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BlackeyedGruesome Sun 02-Jun-19 01:00:03

Crap, they have really fucked you over haven't they.

Get school to write to the GP and ask for a second opinion?

Gather more evidence.if you have done a parenting course you can say I do X and this is the result.

Kayla3790 Sun 02-Jun-19 08:22:15

Got GP tuesday to get second opinion sorted GP rang me and even he said did they do their assessments with their eyes closed. I did a parenting course not that long ago but even they said it was no use to me as i did everything they recommend plus was teaching them things. They have royally screwed me other whilst trying to fuck up the support my little one has in school its wrong

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ATrainSeat Mon 03-Jun-19 16:41:59

If I child has global developmental delay and SPD, I can absolutely see how this could look like ASD but actually not be. His social skill development will be delayed, as will his language and his ability to communicate. If he struggles to communicate or his play is immature due to GDD then he may avoid social interaction. If he is struggling to process sensory information, but can not communicate this, he’s likely to become very frustrated.

I’m shocked at them implying it’s behavioural and disregarding previous professionals’ opinions but I would be tempted to explore other explanations and let him develop.

Also, you don’t need a diagnosis to expect nursery/school (sorry not sure of his age) to implement appropriate interventions. Some of the suggested ASD strategies such as use of Now and Next boards can support children with a processing delay so they’re worth exploring, whatever is causing the behaviour.

Kayla3790 Mon 03-Jun-19 19:31:37

If i didnt have reports saying he displayed major avoidant behaviour aswell as lack of social skills and repetitive behaviours id say that this would be my little mans case but its not every professional but the ones who did the ados are astonished that he scored zero and dont believe it was done properly as well as observations been biased as they kept mentioning they saw others in his class who should be on their list so others think they were not observing as they should be but i will know for definite after a second opinion x

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